I’d known her since she was a teen. She’d been referred for her ‘rebellious nature.’ Well no behaviour program in the world can ethically try to eliminate someone’s nature. And when ‘rebellion’ is an appropriate developmental step, eliminating it simply stunts growth. I’d had all these thoughts in my mind when I want for my first meeting with mom. It took a lot of listening to a very frustrated mother. Her child was disobedient and moody, she was bucking authority and talking back. She missed her daughter the smiling happy child that loved her and listened to her. That child, a kid with Down Syndrome, had hit her teens and thrown every ‘forever happy’ stereotype, that’s tucked behind that extra gene, in the garbage.
After she vented, I took a risk, I said, “I’m afraid your child’s primary diagnosis is no longer Down Syndrome, she is now, and I’m sorry to say this, a teenager.” She laughed and after a moment said, “Yeah this is what all my friends with teenagers are talking about, I just didn’t expect,” and here she stopped herself, “that my daughter would get there too.” It was a moment of realization. So I did come, and we worked on coping strategies and teaching her daughter skills that teens need in order to be safe.
I tell you this because I ran into teen turned young woman a few days ago. She had bright pink hair and a nose ring. I almost didn’t recognize her but when she stopped to look at me, recognizing me without remembering me, it all came flooding back. I called her name and said mine and she walked over laughing. She asked me why I was in a wheelchair now and then I told her that I loved her hair, it could not be more pink, it was the pinnacle of pink. She said, and I’m quoting here, “Yeah, fucking awesome isn’t it?”
I was taken aback. Now before going further here’s full disclosure, I am not surprised or startled when the f-bomb is dropped into a conversation. It is so frequent in conversation that it’s punch has lost a bit of strength. But I was taken aback because I don’t often hear people with intellectual disabilities, who aren’t ‘having behaviours’ as people like to say, just use it calmly as part of a conversation.
She watched my reaction, smiling, then she said, “I’m an adult, I get to pick my words.”
I agreed that she was.
Afterwards I thought that what she had said was interesting. “I get to pick my words.” It’s a statement of some power and complete autonomy. That’s what free people do.
That’s what free people do.